_MEDICINE ethics

_How To Speak CRISPR

When we can edit genes, how do we communicate the true risk of what happens if we don’t?

_Bret Asbury

Asbury is professor of law and associate dean for academic affairs at the Thomas R. Kline School of Law.

For Bret Asbury, it’s not a matter of “if” but “when” gene-editing will allow parents to alter their children’s DNA, at times before they are born.

“The science is moving quickly,” he says, specifically with respect to CRISPR, a technique of reprogramming DNA in plants, animals and humans. “It’s going to happen at some point, and the new question will be, in situations where parents have the option of a fetal genetic intervention, what are the parameters for determining whether to intervene prenatally?”

(CRISPR)

clustered
regularly
interspaced short
palindromic
repeats
A specialized region of DNA with two distinct characteristics: the presence of nucleotide repeats and spacers.

cas9

A protein enzyme that acts like a pair of molecular scissors, capable of cutting and rearranging strands of DNA.

In a recent article published in the Stanford Technology Law Review, Asbury raised this question in relation to prenatal genetic counseling, a field in which the literature has consistently described a marked lack of precision and helpfulness. Genetic counselors, Asbury maintains, often fail to explain the true risk of potential genetic abnormalities identified in screenings, and they at times push parents-to-be toward termination without giving them a true picture of the possibilities ahead.

With the emergence of CRISPR, the gravity of provider-patient miscommunications will be compounded, he warns. Genetic counselors’ being more involved with patients earlier in the pregnancy, and having a better understanding of statistics, can help.

“When genetic counselors come into the room and give parents a bunch of numbers, they should be more sensitive to the fact that the average person has no idea what these numbers mean. It’s a communication problem that’s easy to fix.”

—Bret Asbury

Already, a researcher in China has claimed to use CRISPR on twin babies. While the technology is a long way from becoming widely available, Asbury says, he wants the medical community to be ready for these kinds of conversations when it is.